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bulbar onset

The other day Julia started to complain she had something in her eye. Then one of the boys noticed her right pupil was massive. The boys quickly ruled out drugs as a cause then consulted Doctor Google who said it was either a brain haemorrhage or tumour. So Ben drove her to A&E and the other lads were put in charge of my care. We soon discovered that Jonny would make an excellent nurse.

Here she is on the phone to 111.

Within 30 minutes she’d a head scan but they didn’t find anything. I don’t know if that means she hasn’t a got brain or nothing abnormal was detected. Ju went back the next day and they still couldn’t explain it. I suspect she rubbed some medication in her eye to get night off.

The good news is that our friends prayed and now it’s all good.

Our lovely friend, Pat, from Church has been providing respite for the past few weeks which has been brilliant for Ju. Sue Ryder Hospice at Home carers and nurses finished their training for me today and will start daily respite visits from next week to give Julia some time off so she doesn’t have resort to A&E. It was entertaining for her to sit in on the sessions and see the training pack she’d written in use.

Dexter has started paying attention to my gadgets and tries to fiddle with the settings for my feed pump although thankfully they’re locked. He mimics the noise of the suction in a remarkably realistic way and likes to try on my BiPAP mask. I’m still able to help with him at mealtimes if everyone else has given up in frustration having been splattered with macaroni cheese or ice cream. He finally said my name this week although he still refers to Ju as BumBum.

About a year ago … they said I wouldn’t make it to Christmas so it has been livelier than I expected. I think it’s a God thing.

I want to thank those who kept us in their thoughts or prayers.

A good friend, Mary, popped over to drop some DVDs off and she said I look healthy for someone who’s supposed to be dying! I took that as a compliment.

I’m getting used to the breathing machine (BiPAP). I can now sleep for 3 hours with it on.

On Christmas day the family came round to our place bringing an entire Christmas dinner from as far afield as Grove and Bicester. There were 22 of them and we had a brilliant time. The oldest was Julia’s Dad at 82 and the youngest our newest nephew, Zachary, at 5 weeks and they both slept through most of it. I escaped and slept through the meal but joined everyone to open gifts which included another inflatable Jesus.

We’ve told the boys any moaning coming from the bedroom is probably me getting out of bed as it’s beginning to get really difficult. Julia says it’s my heavy head.

The collar is getting interesting as my neck gets weaker; I’ve broken two of the supports. (Must be my heavy head!)

If you’re into praying: I feel quite healthy at the moment – just tired. Breathing is getting tricky. O2 sats are normal but it’s taking more effort to breathe.

For the last 2 or 3 weeks I have been battling a chest infection with broken nights because of a rattly chest and cough. Julia thought it was due to reflux, where my 2-hourly feeds come back up and get dumped in my lungs. So she asked for a feed pump that basically delivers feed at a lower rate over 12 hours. We start it at 8am so it is done by 8pm and we charge it overnight so there are no leads to trip me up.

I like it because once I have got up at 8am I can go back to bed and sleep all morning with the pump feeding me – no 2 hourly feeds.

My sister Jo says it looks like butterscotch angel delight; if only.

I had another trip to EMU in Abingdon on 22 November where they did a chest x-ray and took bloods and said the infection had gone. All the rattly chest business is old stuff that I would need to clear.

This time Julia got a cuppa tea and a chocolate biscuit.

Prayer Group was round our house last Friday. All the kit we would have had to put in the car and the tiredness meant it wasn’t practical to have it at church. We were left with a calm and peaceful feeling in the house which was due to more than Dexter sleeping at his Mum’s that night.

A good friend Brian popped over to pray after having been woken in the middle of night before with me on his mind and since he prayed for me it has been easier to clear my chest; no more panic to get my breath. I’ve slept really well since then and I’m feeling a bit more human.

The day after Brian came over to pray for me we had a ventilation appointment with the physio. The lovely Anna tweaked my scream extractor (cough assist) to take 2 breaths in and out before the cough phase and then as I cough it is oscillated to try and move all the stuff up. She also trained Julia to do what I can call professional GBH: manual cough assist.

I will have to use my BI PAP (overnight breathing machine) again as Anna said my bicarbonate levels were up a bit showing I wasn’t breathing deeply overnight. Now that the saliva is under control I think it will work better.

When last at EMU they raised the subject of the lilac form. Basically we discussed whether they would jump on my chest if my heart stopped and we decided not to, which seems a good idea.

Julia told the doctors we had a back-up plan…….

In the Bible (Matthew 10 v 8) Jesus commands us to heal the sick and raise the dead. I haven’t seen any people raised from the dead but I’d like to set a challenge for few friends. We called them team Lazarus. (John 11)

I haven’t got the strength in my arms to shave so Andrea my sister in law shaved my face. It was a bit scary but no blood..

I got a head, neck, and shoulders massage this week from the lovely Kath, a holistic therapist, which was sheer bliss. I’m planning to make it a weekly occurrence. https://www.kathannholt.co.uk/

If you’re into praying: please pray for no more rattly chest and getting used to my overnight breathing machine in a few days.

I had an episode of reflux where some feed ended up in my lungs and up my nose. It was scary; I felt like I couldn’t breathe but my Oxygen sats. were the best they’ve been over the last few months. My nose was running and the saliva problem got worse as my body reacted to the feed. My cough wasn’t strong enough to clear it so we used my cough assist and suction machine. Unfortunately my gag reflex is super sensitive (another joy of the MND) – so Julia was looking in my mouth to see the stuff that needed suction and quickly stepped aside as I wretched. It was hilarious!

After 20 minutes I was worn out so we agreed to call an ambulance.

4 minutes later two paramedics turned up in a car (first responders) and a while later two more arrived in an ambulance. Fortunately, in the meantime we had got the chest cleared. Julia said it was “the green uniform effect” and suggested I get a cardboard cut-out of a paramedic.

I didn’t have to go to A&E up at the John Radcliffe in Oxford; they managed to get me an appointment in our local hospital for a chest X-ray to show it had all cleared. The doctor gave me a 3 day course of antibiotics just to be safe.

They are so nice down at EMU (Emergency Multidisciplinary Unit) at Abingdon Hospital – Julia even got a cup NHS tea.

A couple of days later the same thing happened but we managed to clear it without the green uniform effect.

Julia emailed the surgery and the GP got back within the hour, even though it was his day off! He added Dom Pérignon (Domperidone), the true champagne breakfast – to speed up the transit of food through my stomach. Now I am on smaller feeds 6 times a day starting at 7.30am Doesn’t she know I am a teenager !?!

Kevin becomes a teenager

So now we are taking the suction machine and the cough assist wherever we go. I don’t know where I would be without Julia; probably in hospital. I love her more than ever…

Mike has had a fortnight of pampering and beauty treatments, starting with an essential oil hand massage at a meeting of the Oxfordshire MND Association. Our lovely friend, Kath, gave a demonstration and provided the oils for a wonderful afternoon of relaxation. Best bit by far was watching Mike’s Dad give a hand massage to one of the carers.

It’s been a pretty good week for Mike. On Monday we saw our incredible MND team at the John Radcliffe and Prof Talbot was so impressed by the state of Mike he described him as an anomaly. A year ago we asked the tough question about lifespan and were told that bulbar onset, the flavour of MND that Mike has, is usually 2 years from the start of symptoms. That’s Christmas this year. But it is progressing much more slowly than at the beginning and isn’t doing what was expected at all! This is great news and must be a God thing.

Following the Chocolate Button Incident Mike only challenges his airway occasionally now with a spoonful of yoghurt so he has been losing weight; maintaining weight leads to a longer lifespan (as long as you don’t choke on what you’re trying to eat) so from next week he will be switching to a new feed. The dietician suggested that perhaps it was time for a pump but we like the flexibility of small bottles at mealtimes; if he didn’t have to wake up for a feed I think he’d just spend all day in bed watching Netflix.

If you’re of a delicate disposition you may want to skip this next bit because it’s about saliva. As is common in people with MND Mike’s saliva is thick and there’s a lot of it about especially when he lays down to go to bed or reclines in his special chair. This is quite annoying as his constant coughing keeps me awake and drowns out the TV, so something had to be done. Hyoscine patches have done a reasonable job but the past few weeks the saliva situation has been worsening. More medications were tried with no improvements and bouts of debilitating nausea and vomiting. So the only things left were Botox (works for three months) or radiotherapy (irreversible).

Mike chose the botulinum toxin which involves three injections into his parotid and salivary glands. Sounds painful. On a positive note the car park was quiet as it was a Friday and the consultants were all out on the golf course. Mike’s not great around needles but after a thorough explanation of the procedure decided to go ahead. I attempted to distract him half way through by falling off my chair but he still felt light-headed afterwards and needed a little lie down.

So my shoulders have lost their strength and when I have a shower I cannot dry my back. Julia ends up drying me. She is good to me. I feel like royalty; I’m sure the Queen has someone who dries her back.

I haven’t yet asked Julia to wear her nurse’s uniform while she cares for me but it’s just a matter of time…

Andrea, Julia’s sister, is also a carer and she’s offered to give me a bed bath – I hope she’s joking – so I’ve got a phrase at the top of the text to speech app ready: “Help! Get this woman off me!”

Also in bed I have trouble moving about to get comfy especially when I slide down the bed in the night. Julia says it like having a seal in bed.

My neck is getting weaker so I’ve had to wear a collar when I’m not sitting in my chair or bed.

I found it rubbed under my chin and the ventilation physios gave me a gel pad to help.
Sad news: the chocolate puddings are gone as swallowing them was getting too tricky. I’m on soups or yogurts without any bits (a bit like Dexter). And I have trouble with soup spoons, even in my stronger right hand, so I have to use a cup for the soup.

Luckily I can still have McDonald’s chocolate milk shake, though it takes much longer to drink nowadays. And do you know they contain 433 kcals! (all part of maintaining my weight).

I’ve become a full teenager; Julia wakes me up for my breakfast feed at 9am then I’m back to sleep for a few hours till my 12 noon feed. I’m sleeping for 14 hours minimum a night! I’ve also got into duvet days where I spend most of the day in bed getting up for tea. I’ve tried to cut down on the Netflix and Amazon Prime bingeing.

I’ve had a blood test but the GP says it doesn’t show anything horribly wrong to explain the tiredness – so it must be part of the disease.

If you are into prayer; Please pray I’ll get used to my BiPAP breathing machine for overnight – it is proving hard to get used to as it seems to be fighting with my breathing. At my last ventilation appointment the numbers had gone down so I probably need to start using it.

In late Sept 2017 my voice started changing and I knew it was time to tell more people… so I grabbed my friend Phil and met up to record a short video message to tell everyone about the diagnosis. Since then, after lots of coffees and chats, I thought it would be good to start a blog. I’ve not done one before so bear with me as I learn what to do. The good news is that Julia, my wife, has agreed to write some posts; so we should have some laughs…

This is where it all started:
You may have noticed that my voice has changed over the last few weeks…
Well there’s some good news and some bad news…

(Credit to Phil Adams for taking my ramblings and producing this masterpiece)